Tuesday, April 10, 2012

Yesterday I Met a Mother

Yesterday I met a mother.
All I feared, she lives.
All of my worst-case-scenarios
are her Monday to Fridays.

And I just can't stop thinking about it.
The thing is, I read about autism a lot, I think about autism a lot.
I worry about autism a lot.
And I identiy with the other parents a lot too.

I cannot help but feel a tug of concern, and a tug of the heart for all of the children on the spectrum.
When I hear of their struggles, or their mistreatment, it stings.
I think of all the things I have wanted to protect my own son from.
And it saddens me to hear from another mom, that the source of the pain comes from professionals.

It is time we rethink bullying.
We spend so much time and effort teaching children not to bully.

It's time we start teaching adults.
How not to use their positions of authority to intimidate and belittle.
How to model respectful treatment of others.

There is a sad reality that parents of exceptional children are forced to come to terms with.  It is a universially shared experience, but one that might catch you by surprise.  Not all of the professionals whose help you seek will be helpful.  Not all of the supports will be supportive.  Sometimes it is the people who are supoossed to be assisting you on your journey who end up hurting you the most.

Be selective, shop around. 
Find the people who are passionate about their careers.  Who are not just good at their jobs, but kind and good.

Because yesterday I met a mother.  And I think she needs to keep looking.

Sunday, April 1, 2012

1 in 88

Okay, here we go again.

Since the new autism prevalance stats came out from the CDC the other day, I have been struggling with how to write about it.

This is now my third attempt, and I am really hoping that I will get it right this time.

I am stuck here, I know how the numbers makes me feel, but I'm not sure I can express it properly.

First, I have to be clear.  In my house, autism is celebrated.  It is celebrated and welcome.  While I certainly wish my boy had it easier, I do not in any way wish him any diferent than how he is.  Because he is perfect.  Perfection.  Lovely.

So it is hard for me to want to caution everyone about an epidemic, because to me, autism is not a tragedy.

But, it is extrodinarily challenging at times.  It doesn't only affect the person with autism, but the family that surrounds them as well.  Autism in the house means that you have to make some tough choices, have clear goals, a life-long dedication to learning and helping, and a very, very thick skin.  Autism is not for the weak.

And this is where I struggle.  I want everyone to embrace autism in this world as valid and good.  I want everyone to appreciate the beauty and genius that are part of autism.

But truthfully that isn't enough.  I know that.

Tomorrow is World Autism Awareness Day, and we go into it with this new statistic in mind.
When you see houses and buildings shining blue lights for autism tomorrow night, or when you see our awareness ribbon, or even our balloon release, I want you all to think, 1 in 88.  And then I would like you to look beyond the numbers, and to think about the many ways people are affected.

The people who have sensory systems that make the world overwhelming.
The mothers who will never hear their children speak.
The fear and worry that keeps a parent up at night.
Families paying for therapies and services.
Seeing your child for all that they are, while others can't see past their label.
Phone calls.
Follow-up phone calls.
Team meetings.
Trying to find activities that your child can participate in, and enjoy.
Trying to find a work placement for your adult child.
Dealing with rude people in public.
Finding clothes your child will actually wear.
Walking on egg shells.
Keeping your fingers crossed.
Feeing overwhelmed and blessed all at once.

Think about the 1 in 88 families who want to find acceptance, and 1 in 88 people who need it.

I know this post still isn't right.  I guess I just want you to know that these numbers are rising, so even if autism isn't touching your life yet, please know that it will.  Don't be afraid of it, see it for its good, and recognize the struggles of those who are working with it already.

Support us, and we will support you too. 
Learn all that you can about it, so that you can be the face of understanding that we're all looking or.